The chronicle of a family thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.

Wednesday, April 24, 2013

Seismic Shift

As a resident of California, I half-expect a life altering earthquake to happen at any given moment. I walk around with my ears tuned for the low rumble that signals earth-shattering movement. A few weeks ago there was a massive seismic shift that I missed. We're not sure exactly when it happened, but something critical shifted for Simon. He has started closing gaps at a speed we can't quite comprehend. As his teacher said, "it's like 50% of his programs loaded all at once".

First and most dramatically, our kid started eating. Like really eating. Pretty much overnight he went from eating *maybe* 5% of his calories by mouth to 30% by mouth. He used to have a few good days of eating 2 oz of food at lunch but then he'd get a stuffy nose or he'd get a little gaggy or the winds were wrong and it would be over. Now he just chews with his mouth open if his nose is stuffy. He gags with food in his mouth, waits until the nausea passes and then keeps chewing. And swallows it. He asks for food night and day. It's insane. And hilariously ironic.We're going to Children's Hospital Orange County next Tuesday to do the intake process for an intensive feeding program. A program that we've fought to qualify for for months. If he keeps up like this, we might end up not needing it.

He also has started potty training in earnest. We have been working on potty training for I don't know how many years and decided to just stop a few months ago. A week and a half ago, we decided to try it again by not letting him wear a diaper in the house. He went diaper free on Sunday and only had one accident. He has said on multiple occasions, "Mama/Mommy, I have to go pee" and we go and try and he does it. This is nothing short of a miracle. It's going to be a long road, but it's happening!

His pragmatic speech is insane. If he's in another room and wants someone's attention, he calls their name LOUDLY until they respond. If he calls Laura and she doesn't respond the first 3 times to "Mommy", he switches to "Mommy Laura". This is a level of sophistication and comprehension about engaging another person that we have never seen before. He'll grab your hand and take you to things.

Until recently, he usually acts like he doesn't really notice or care if you're there or not. Last week we all went out to sushi and I started to walk him down the street while Laura stayed behind to pay the bill. He stopped just outside the restaurant and said, "Where's Mommy". He has never asked about anyone in that way before. And he wouldn't keep walking. He was aware that she wasn't there and he wanted to be with her and was not willing to go without her. It was a first.

I was in Trader Joes with him this weekend and he saw a papaya. He turned to me and asked me "what's this?" I think my jaw literally dropped open. Our kid has NEVER asked what something was. I told him and he asked me about 4 other items. It was amazing. He's never asked a why question and I have a feeling that's next.

He has started dancing to one of the shows he has watched for months. All of a sudden, he's copying their movements. Before this shift, he had a very robotic, awkward movement that he would do only if you practically had a cheerleading team screaming encouragement. He's jumping and running and in his body in a totlaly different way.

We have no idea what changed but we are so totally digging it. We also wonder what this will mean for the pending autism assessments he's undergoing to determine if he will get a medical diagnosis of autism in addition to the classification by the school district. He had a speech assessment as part of the medical testing and the therapist was really unclear about whether or not he's on the spectrum after meeting with him. We're still waiting for the report. We may still go with the diagnosis based on the school assessment in order to get more services, but it's definitely not crystal clear that he's on the spectrum.

On some level it feels like these things are coming out of nowhere, but if I step back for a second I know that's not true. Laura has spent almost every single minute of every single day of Simon's life to get him here. She has worked tirelessly on his speech, potty training, eating, balance, movement, social skills, all of it for years. And with these recent changes, particularly the eating and potty training, her work has actually increased exponentally. She's tired. Thrilled but tired. She's still in her chaplaincy program until the end of May and balancing all of of this has been hard.We still haven't figured out quite how to shift some of the labor to me but we're trying. Just got to give her a shout out. This would not be happening without her tireless love, dedication, and insane amounts of work.

A final note: Our friend Glennon, the author of the incredibly popular blog Momastery and #3 New York Times bestseller "Carry On Warrior" just posted a piece I wrote for her blog. She has, um, over 75,000 readers. The comments have been unbelievably touching. Last weekend we got to meet her in the flesh when she was here for her book tour. It was beautiful. Really, it was like catching up with a lifelong friend, not meeting someone in person for the first time. If you haven't read her blog, you must. Honest.

Here are some pics to capture the last few weeks.

Scary animal in the kitchen

Tigers in the kitchen

Simon's awesome Angry Birds birthday cake made by his Auntie Joan

Meeting Glennon!

Simon and our sweet neighbor Nathan having snuggle time

Simon and Nathan playing "Hot dog" in the hammock

His favorite phrase these days is "you are hi-larious!" Evidently Nathan was!

I asked the universe for inspiration and you showed up in my facebook feed. I feel very lucky and honored this morning. Simon's laugh has me giggling aloud. I hope you are able to digest and celebrate all of these huge and small victories - testaments to your huge love, giant faith and tireless efforts. To all shifts big and small, thank you thank you thank you. <3

Saw your post on momastery. I was the one doing the sobbing withing the first few paragraphs.. So i came over here to see how things progressed and now I'm in love with your family and hope and pray that you all get blessings galore and your strength puts me to shame!!! Thanks for sharing your (the plural your) courageous story. Love, Dory N. ( I am using an anonymous identity because i haven't the first clue what my passwords are supposed to be for the other choices)

Just wanted to connect on your blog to tell you how much I LOVE your post on Momastery.

I'm a Jewish-Oakland-living-Berkeley-raised mom who also thought :no way do I have something in common with a born-again Christian", but amazingly, I think all of us, especially us women and mothers, have just.so.much.in.common. I mean, your story just resonates with me, having friends who just spent the last 4 years fighting for their chronically ill child at Children's and UCSF and Stanford, and everywhere. It's an unbelievable process, demanding everyone in a community to step up.

Stay strong, I'm so proud of all the real work you are doing to heal your family and our world.

I just discovered the Momastory blog today and of course loved it....and read your article on her blog just now and was totally touched, which sent me to your blog. I just read your good news about Simon and wanted to say Congratulations! I'm a mom of two and a social worker in the Los Angeles area who works with children and families and ne thing I've learned over the past 17 years at my job is that kids will always suprise and amaze you! Way to go Simon....keep up the good work litle man! I live in Orange County so if you need a little monkee support or encouragement while you're down here at CHOC, let me know!

Hey that is terrific that he's kind of zooming through a bunch of milestones. My delayed third baby Caroline was similar -- the weird thing may be, if Simon is similar, how suddenly you realize how much they have been paying attention the whole time. For example, Caroline started talking about the election...??? What, was she reading the paper? Love from your cruise director, Erica

I found your blog months ago from a comment written on Momastery. I really enjoy reading about your life. My son has a speech delay and its always reassuring to know that we are not alone in our struggles (and victories). We are cheering for Simon (and both of you!)

I love Glennon's A Mountain I would die on, piece... and I applaud her fierce bravery.

Thank you for showing up to your true selves every single day, for partnering to make the world a little better place, for doing the hardest kind of work: healing despite a world of pain and conflict and contradiction...

My motto is this: "We are neighbors in grief and allies in healing."

Though my firstborn was one of those who never came home from NICU, I am indebted to them for their compassion, their courage, and their undying love...

I have spent the past twenty-three years working on bringing the world a model for healing in the face of death and destruction. Part of that healing is realizing that loss is, in part, about our lives being different than we'd imagined them, or different from the way we'd come to know them to be...

I love Glennon's A Mountain I would die on, piece... and I applaud her fierce bravery.

Thank you for showing up to your true selves every single day, for partnering to make the world a little better place, for doing the hardest kind of work: healing despite a world of pain and conflict and contradiction...

My motto is this: "We are neighbors in grief and allies in healing."

Though my firstborn was one of those who never came home from NICU, I am indebted to them for their compassion, their courage, and their undying love...

I have spent the past twenty-three years working on bringing the world a model for healing in the face of death and destruction. Part of that healing is realizing that loss is, in part, about our lives being different than we'd imagined them, or different from the way we'd come to know them to be...

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com